My Greatest Fears as a Pulmonary Fibrosis Patient
As a young person living with idiopathic pulmonary fibrosis (IPF), I am scared of many things. However, I don’t get into the habit of voicing my fears of what this disease is ultimately going to cost me, but sometimes, I must talk about them. There is a lot of vulnerability in expressing fear in the face of an illness, but there is also a lot of strength, inspiration, and comfort that others can draw from that admission.
I have avoided talking about my fears around my family because I know they are already aware of the impact of this disease. When researching information about pulmonary fibrosis online, the words fatal, life-threatening, no cure, and poor prognosis are bolded on almost every webpage.
Despite the poor prognosis, patients have to learn to live with their illness the best they can, and make each day count for something good. However, that doesn’t mean fear doesn’t fill our minds from time to time. There is a lot to be scared about when living with life-threatening lung disease, and even though patients may not voice it often, it doesn’t mean we’re not scared.
Join the PF forums: an online community for patients and caregivers living with Pulmonary Fibrosis.
I choose not to voice my fears because I don’t want my family and friends to pick up on it. I want them to know that I can be strong in the face of this disease, but I am glad to have this platform to write about my fears.
As a young adult living with IPF, here are some of the things I’m most scared of:
- My impending death: I know that IPF is going to end my life early. Even post-lung transplant, complications and infections can lead to premature death. Here’s the thing: I’m really not afraid of dying. Everyone is going to die; it is part of the great circle of life. I am, however, scared of dying from this disease.
- The impact on my family and friends: One of my favorite movies is “The Fault in Our Stars.” It openly and honestly confronts the death of young adults due to a fatal illness. There is one part that particularly resonates with me; when the main character voices her fear about how her death is going to impact on her parents. She fears that they will feel “stuck” in the sadness of her death. I share this fear, and worry about how my death will impact on those around me.
- The uncertainty of my future: Living with a chronic illness makes everything seem so uncertain. Do we plan a wedding? Start a family? Spend my “healthy” days traveling and seeing the world? These are all things that someone who is healthy doesn’t have to question. The uncertainty can be really scary, especially when you don’t know what each year will bring.
- Getting sick and rapidly declining: In previous columns and on the Pulmonary Fibrosis News forums I’ve written about the crippling fear I have of getting sick. In May 2017, I fell ill with a virus and experienced an acute exacerbation, which caused a rapid decline in my lung function. I fear it could happen again. As a result, I do everything I can to avoid illness: regular hand hygiene, avoiding crowds, and staying away from others who are sick.
- Leaving my dog behind: I can’t elaborate on this too much without crying because this is one of my biggest fears. I don’t want her to wonder where I’ve gone, or be sad that I’ve left her. My Golden Retriever is my world, and one of my greatest fears is her feeling that I abandoned her.
What are some of the things you are scared of as a result of living with IPF/PF? Sharing your fears can be scary, but it can also bring a lot of strength to others. Join this discussion in our PF forums.
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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
About the Author
Comments
lesleypowell
When first diagnosed with ipf was Jan 17. I didn't realise how serious it was. Only the past 7 month. I am now on 15 hrs of oxygen at night 4 hours daily. My lifestyle as changed I am still so pleased to even be here. I just take each day as it comes.Thats the way it is now. Lesley
Charlene Marshall
Hi Lesley,
Thanks so much for reading my columns and for getting in touch via the comments. It's always so great to hear from others, although I am sorry that it is such a cruel disease that brings us together. Our lives change so much following a diagnosis of IPF, don't they? So glad you have such a positive outlook and gratitude for being here, that will go a long way. Take each day as it comes, what great advice :)
Take care, and sending you the very best!
Charlene.
Chuck
The day before the Dr. Told you what you had ,you knew you were going to die. When the Dr. Told me I had I P F I STILL DON'T KNOW WHERE I WILL DIE! But l plan my days to a better use!
Charlene Marshall
Hi Chuck,
Thanks for connecting and for reading my columns - I always love hearing from others! I remember how confusing and difficult my initial diagnosis period was, and it sure was tough. You're right - in the end NO ONE can tell us where, when or how we will die. As a result, the best thing we can do is put one foot in front of the other and keep trying to live every day. Kudos to you :)
Cheers,
Charlene.
Harry Penders
The most difficult part of current life with 'IPF' is the lack of hope. I'm being started on 'Pirfenidone' in the hope (there's that word again) that something better will be found in the next couple of years. I can hardly believe it, as I'm also a 'Polio' survivor from the iron lung units. Remember when there was no hope for us kids, but I told the doctors to watch walk off the unit. They didn't believe me and I did 18 months later. Unlike other diseases, there's little coverage perhaps because research, in general, is being cut back everywhere. Without research, there'no news. Better headway is being made in other countries, but look how quick this disease takes us. Not much you can do if you can't breathe. I found that, out early in life. The doctors don't know for sure how we get it. The 'VA' wanted to call it 'COPD,' the safe disease. The smoker's or alcoholic disease is where they put me until I got a second opinion at Keiser and a follow-up biopsy, that ruled it in 'IPF.' Will the VA take care of the cost? Who knows? But being already disabled... maybe. Second opinions are not very popular with specialists, I learned that in critical care nursing. Tomorrow I'll know, though I feel I'm facing some kind of man-made mountain.
Charlene Marshall
Hi Harry,
Thank you so much for reading my columns and for getting in touch via the comments. I certainly agree that IPF can make hope seem impossible, and it is such a scary disease since there is no cure, and it feels like research isn't moving fast enough. Hopefully the Esbriet will help you, I know it has been successful in slowing down (although, not curing of course) the progression of this disease in others. The side effects may be rough at first, but hopefully (there is that word again) it will be worth it for you! I cross my fingers every day that a break through will be found for us, as we don't have time to wait for research or slow-moving progress. Hang in there Harry, and thanks for writing. Wishing you well, and hoping for good results at your appointment.
Kind regards,
Charlene.
cacarr
This is something to be hopeful about:
http://www.fibrogen.com/pamrevlumab/
In Phase 2 studies -- in people -- some actual reversal of fibrosis has been noted. Results are promising; looks likely to be better than the current standard of care. The drug has been fast-tracked.
Charlene Marshall
Hello Christopher,
Thanks so much for getting in touch and reading my columns. I am thankful for the link you shared regarding the Fibrogen website. I'm going to pass it onto someone in our News department to review it and maybe share it with our PF News community. This is something to be hopeful about for sure, let's keep our fingers crossed that more emerges over the next few months about it. Thanks again for sharing!
Charlene.
Chuck Harrison
Hi Charlene , Chuck here , great words , though I don't fear death , I really believe with hospice and such I will quietly go , not in a hospital with strangers , but home with family . Exasperation has happened twice , I really thought I would not make through the summer of '17 . My family believes they are ready for any eventuality, they may be wrong .
Today is a terrible day for side effects from ofev , RA , it's just got me in the dumps , the one fear I have is giving up , I'm not that kinda person ,but we both know had bad this can get .
So it's a great piece you wrote , I hope others plus care good verse do give it a read !
Till another time
Have the best day you can ! ?
Charlene Marshall
Hi Chuck,
Thanks so much for connecting via the comments and for reading my columns. Nice to hear from you here in addition to the forums :)
I also don't fear death in general, however, dying from this disease scares me. Hospice definitely has it right for the most part, and if our deaths can be planned and prepared for then there are lots of opportunities to do it "right". However, exacerbations can happen causing our lungs to misbehave and then it might not always end the way we want it to. That is what really scares me!
So sorry you're having bad side effects from the OFEV, hope they improve for you soon. I'm here for you, so always reach out if you ever feel like 'giving up' ... I know that feeling, but we must push through for as long as we can. Thanks for your kind words on my column!
Take care,
Charlene.
Steve Daggett
Hi Charlene!
Thanks for your openness about your fears. I know it’s difficult to share with others because, if you’re like me, you don’t want to burden others with your ‘problems’ (even if they are life-threatening!).
For me, being a little over a year into my 60s, I have some similar fears, but from a different perspective.
I, too, have fears about the impact on my family and friends. Having kids and grandkids has been one of the greatest joys in my life! They are very much a part of my life – even though in recent weeks I’ve had to temporarily move 800 miles away to be close to UCLA, waiting for a lung transplant – so I rarely get to see them. My wife is the most important person in my life…my soulmate in the truest sense of the word. Being separated by distance is incredibly difficult for both of us. We try to arrange her visiting every 3 weeks (she’s still working), but even then, being apart is painful.
All this to say, I have been grieving the future for my family once I am no longer on the earth. I know they can and will get along without me, but I know it will be difficult for them. Case in point…my dad passed away 4 years ago this week. He, too, was a very integral part in our family dynamic. Even though he was 81, his death was still a tragic loss for us. I’ve been reflecting this week on the things he has missed in the past 4 years, just within our family. I grieve for my wife and family – for not having me around for important events like weddings, births, graduations, etc., and also just having fun together.
People my age die all the time, so it’s not like people will be shocked and dismayed that I’ve ‘left the earth too soon’, as would be the case for someone much younger.
I’m not afraid of death, but I’m afraid of slowly dying by suffocation, or post-transplant complications.
You’re correct, we all have expiration dates, but those of us who enjoy life and living to the fullest want to continue doing that for as long as we can!
I know that writing thoughts out (like blogging) is very cathartic. Keep doing it!
Through social media and other means I have over 1000 people (from literally all over the world) following my journey, praying for me and encouraging me along the way. Sharing your journey with others can be an incredibly uplifting experience!
Blessings!
Steve
Charlene Marshall
Hi Steve,
Thanks for getting in touch -- nice to connect with you here in addition to on the forums. I hope you're doing well, and I so appreciate you reading my columns :)
It is hard to voice our "problems" to others, especially when we fear we will be a bother, however, sometimes it is definitely necessary especially as we navigate a chronic illness. Sorry to hear you can relate to my fears, this illness is so cruel to all of us isn't it, regardless of age!
Wishing you nothing but the best on your transplant journey, and know that in addition to those 1000 supporting you via social media that I am behind you too and thinking of you! Here's hoping your call comes soon, please do keep us posted.
Warmest regards,
Charlene.
Heather Kirkwood
I very much understand how you feel about your dog. Being sick can be isolating and our dogs get us through. I am not under 30, but have had PF due to HPS since I was 36. Six months ago I had a lung transplant. Walking my dog before and after was the best thing for me. I called it my Fin therapy.
Charlene Marshall
Hi Heather,
Thank you so much for getting in touch with me and reading my columns. Fin therapy - that is amazing, what a wonderful gift your dog has provided you! My dog is such a wonderful part of my life, and like you, she gets me through so much. So glad to hear you've had a successful lung transplant, congratulations. Your post has given me so much hope and I hope you are continuing to do well! :)
Warmest regards,
Charlene.
JillT
I can definitely relate about your dog. That was my immediate thought once I realised the seriousness of the diagnosis. My dog was elderly and luckily I outlived him. That was a huge relief to me.
My IPF was picked up on a CT scan for something else and before I had many symptoms beyond a slight breathlessness on exertion. That was in 2009 and 9 years later, I'm lucky to still be here and told that my fibrosis is proceeding slowly, though I've been feeling the effects more in the past couple of years than ever before.
Mostly I try to not dwell on it because there's really nothing I can do to effect the outcome.
My response to a subsequent diagnosis of Type 2 diabetes was totally the opposite simply because there were things I could do, so I threw myself into learning as much as I could, fixing my diet, etc, etc.
I think one of the hardest things to deal with when it comes to IPF is the total lack of agency against the progression and outcomes. It's a bitter pill to swallow, esp for anyone with, let's say control issues (should probably read, "control freak", lol).
Best wishes
Jill (66yo)
Charlene Marshall
Hi Jill,
Thanks so much for getting in touch and for sharing your thoughts via the comments. Aren't dogs amazing, and what they can do for us in terms of lifting our spirits? I can't imagine my life without my "furbaby".
Sorry to hear about your IPF diagnosis, although I am so grateful for your sharing your experience as it gives me hope - 9 years, that is wonderful news! I hope your symptoms continue to be minimal and that the symptoms progress slowly for you. I couldn't agree more re: the lack of agency against this disease and its outcome. No matter what you do (healthy eating, exercise, etc) there is no way to change the prognosis of this illness and it certainly feels unfair.
Best wishes to you and thank you again for connecting.
Kind regards,
Charlene.
Peter Davies
Hi Charlene have read your insperational words for couple of months now , wot a lovely young lady you are and the dog thing ( i am dreading it 2 ) . I had a lower lobe resection in 2012 and now my ipf is in fast forward goin no where with out oxygen blah blah very difficult . Am now on transplant list but prognosis is poor kept myself as fit as poss but have put weight on again ,need 2 be fit which is difficult as im sure your aware of ?i luckily have a friend who i met at rehab class we went 2 and still meet regularly which a great help . Will chat again hopefully Charlene look after yourself and your best day possible in my thoughts pete
Charlene Marshall
Hi Peter,
Thank you so much for reading my columns, and for all of your kind words and comments. I love hearing from others who are also on this journey with me, although I certainly wish it wasn't IPF that brought us all together!
What kind of dog do you have? My golden retriever came into our life "by accident" and now I couldn't imagine our lives without her and one of my greatest fears is her feeling abandoned. I couldn't imagine that!
Sorry to hear your IPF is causing new issues since your lobe resection in 2012. Did that surgery give you a number of good years before your IPF started causing issues? So glad you're on the transplant list. I know lots of people who have had successful transplants, so hang onto hope there. Yes, I do know how hard it is to remain fit and active with a lung disease. I can't excerise as much anymore due to physical restrictions with my lungs, so I've adjusted my diet instead. They said weight management is 80% what we eat anyways. Keep up with the rehab class, kudos to you!
Take care and connect any time.
Regards,
Charlene.
Nancy D
It's so fascinating and comforting to read these stories from all of you sharing PF experiences and fears. Thank you!
My fears - not in this order - revolve around
1) getting sick and getting worse or having to be hospitalized
2) people (insensitive health care practioners included) thinking I brought this on myself somehow or disregarding what I say or fearing I'm contagious
3) being pitied (or being pitiful?)
4) a slow, painful death
5) being out in the world and around new people - avoiding embarrassment, awkwardness, and exposure to illness or environmental irritants
6) becoming hopeless and depressed
7) my family and friends feeling sadness or guilt or regret - seeing my struggles but not my many blessings and joys in living
8) becoming a burden to my wonderfully kind and caring husband (this is a big one)
There are probably more and I could write and share so much with all of you but I decided to stick to the topic. Maybe another time. I hope that you all experience some joy today.
Nancy
Diagnosed in 2013 at the age of 60
Charlene Marshall
Hi Nancy,
Thank you for reading my columns and for connecting via the comments. I always love hearing from others, and like you find it both fascinating and comforting to read of others' experiences with IPF. That said, I wish it wasn't this cruel disease that brings us all together.
I've never really voiced my fear of others' thinking that somehow I made myself sick or brought it upon myself, but now that I think of it (and you've shared your experience with this), I agree that it is a worry of mine too. I also don't want to be avoided out of fear that my illness is contagious! Hopelessness is a very real fear for me too. I hope I never experience this, and that others around me help me to remain hopeful.
Thank you for being vulnerable and voicing your fears, they really helped me and I also felt comforted by knowing that others feel similar to the way that I do. Please do write any time, and if you're interested, we have a wonderful PF forum of people who also "get it". You can join for free, here if you're interested: http://pulmonaryfibrosisnews.com/forums/ ... this platform really helps me when I am feeling alone. Take care, and I hope you also find some joy in your day.
Kindest regards,
Charlene.
JillT
Just an addendum to previous thoughts.
I was offered both IPF drugs but turned them down for fear of adding to existing gut issues.
I recently saw a study (admittedly in a mouse model) using metformin having anti-fibrotic benefit. Since it's a drug with a long history of safe use, I'm more inclined to think about using it than the other 2 drugs, especially since I also have Type 2 diabetes which is currently unmedicated.
A link to the study if you're interested:
https://www.nature.com/articles/s41591-018-0087-6
I need to speak to my doctor about it on my next visit.
Charlene Marshall
Hi Jill,
Thanks for getting back in touch with us and sharing the information about Metformin. This has definitely be a hope-filled, very popular topic of discussion on our PF News forums too. Lots of people are wondering about how Metformin can be used in the treatment of IPF, especially since it is FDA approved with very little side effects. The "jury" has been out in terms of doctors encouraging it based on a few patients I've spoken with, but if you do talk to your physician, I'd love to hear what he/she has to say. So far the feedback has been that the study is based on mice, which aren't always reflective of how humans will respond. It is something I am keeping a "pulse" on though for sure as I really want to know more too.
Thanks again and let us know how it goes with your doctor if you can :)
Chat soon,
Charlene.
Charlene Marshall
Hi Jill,
Thanks for getting in touch and following up to our previous conversation. Yes, you're right - the metformin was done on a mouse model and thus, doctors aren't quite endorsing it yet for patients, and as far as I know no one is participating in this study yet. However, here is hoping that someone will be soon! Really curious to get an update on your doctor's opinion when you speak to him or her about it. Would you mind reporting back?
Thanks in advance!
Charlene.
JillT
Will do. Hopefully I'll talk to my GP about it soon - he's pretty easygoing and hopefully because of the pre-existing Type 2 he will prescribe without questioning too much.
I've previously been on extended release metformin, but ended up with bleeding gastritis and anemia, though that could be because of the coating rather than the metformin component. So, will hopefully at least trial the standard metformin to see if I can tolerate it. My gut is very sensitive, unfortunately and it doesn't take much to upset.
Not sure what your policy is re. discussion of dietary interventions, so if you don't want to post this publicly, that's up to your discretion. However, I've run across a podcast called COPD Wellness which discusses a lot of research relating to especially COPD, but also other pulmonary diseases that don't respond to steroidal drugs:
https://copdathlete.com/category/podcasts/
I can't help but wonder if the low carb/ketogenic diet I've been following for the past 6 years for my Type 2 diabetes hasn't assisted in slowing the progression of my IPF. Or maybe it's just dumb luck :-)
Also heard of a guy who has done very well on a Paleo autoimmune diet - his name is Bill Vick - just looked on Google and there seems to be an article about him on this site:
http://pulmonaryfibrosisnews.com/2017/03/24/78-year-old-runner-shows-how-he-cheats-pulmonary-fibrosis/
Is diet something you've looked into for yourself?
Best,
Jill
Charlene Marshall
Hi Jill,
Thanks so much for getting back to me regarding this topic.
I hope your appointment with the GP goes well and that he is willing to prescribe without too many questions. Do you have an update on this yet?
Yes, I've heard that while Metformin can have amazing effects on managing certain illnesses, that it can be hard on other organs as well. Sorry to hear of your experience with the anemia, that must have been tough for you. I hope the slow-release capsule is more effective for you!
I don't mind chatting about diet policies at all. It is such an important part of this disease management. Thanks for posting the link to the podcast that you've found, I'll check it out. I think it is one I may have come across already, and I do find a lot of information about COPD also helpful towards IPF management. I'll check it out today, thanks again!
The low carb and high-fats (healthy fats, only) diet is really working wonders for a number of people. I haven't cut out carbs, but significantly lowered them and only to one meal a day and very few. Typically my stomach is feeling a lot better than it was, and I just feel better overall.
Bill Vick is wonderful and I am so glad he shares his experience for other patients to follow. Glad you came across that article :)
I haven't really looked into it a lot re: diet, as it isn't my focus but I am followed by a transplant program and have a nutritionist through there. She actually supports the low carb, healthy fats diet - not necessarily keto (she doesn't like that diet) but following it similar. Not sure if this helps?
Chat soon and I hope you're doing well.
Kind regards,
Charlene.
JillT
Hi again Charlene,
Well, GP was very open to the idea because typically as a Type 2 I should/would already be on the drug, so he had no problem prescribing. He was also quite understanding as to why I would prefer to take a drug with a long history of safe use (plus I already get regular monitoring for kidney and liver function because of Type 2) rather than newer drugs without the historical data.
So, have my first prescription filled and took my first dose. Will be interesting to see how I go with it over the next few days.
One of the reasons that ketogenic diets may be of use in lung conditions is that BOHB appears to be protective against hypoxia - a lot of the research started out as investigation into rebreathing devices for Navy divers.
I find the research endlessly fascinating - I'm even more pleased than ever that I decided to follow it for my Type 2 diagnosis. There are quite a few interviews on Youtube with Dr Dominic D'Agostino who is one of the main researchers. There's also been a couple of conferences with talks on the metabolic effects of ketosis (if you search Epigenix Foundation on Youtube, you should find them).
The diet has certainly helped with my Type 2 as I've had normal A1c levels for the past 6 years, even with no medication.
I eat higher carb (50-70g per day over 2 meals - breakfast and late lunch) using time restricted feeding (16:8) most days and am usually in ketosis by the evening.
Not due to see the respiratory specialist for another 6 months, so will be interesting to see what he says. I think I'm a bit in the bad books there because I turned down their new wonder drugs which were offered for the first time about 2 years ago in Western Australia. I've also told them I'm not going to have any more lung function tests because I've become more than a little phobic about them and that they'll have to make do with saturation levels or walking tests. I get the feeling they don't quite know what to make of my 'non-compliance'. Oh well, too bad, it's my life so it's my choice :-)
On a different topic, I tried to join the forums, but the sign up process rejected my email address. Any suggestion on what I can do to get around this?
Best,
Jill
Charlene Marshall
Hi Jill,
Nice to hear from you, thanks for getting back to me and providing a bit of an update on how things are going for you!
I'm so glad to hear your doctor was so willing to prescribe the Metformin. Did he/she lean one way or another in terms of its effectiveness? It makes sense that the doctor would prescribe it seeing as you have Type 2 already, but I do wonder if another doctor would be so open to prescribing it to someone who just has IPF/PF and not diabetes. I'd be curious for sure! It is a safe drug I remember, so maybe. Good news though that you now have a prescription for it, I am glad for you and will keep my fingers crossed that it works :)
How is it going so far for you? I've heard it can have some nasty side effects but no more than most other drugs and if it works, then the benefits definitely outweigh those effects.
I'll definitely take a look at the videos on Youtube that you suggested, thanks for giving me that information. Sometimes the keto diet feels like a fad, other times I speak with people who really find it beneficial and who have been so successful with rapid weight loss too. I'll check out the benefits for patients with lung diseases too, because like you, I think I'd also find that fascinating! Glad it seems to be working for you :)
I love your attitude around compliance, and you are absolutely right: it is our lives and therefore, our choices!
Hmm that is odd re: not being able to join the forums. What email address did you use to sign up? If you send it to me at: [email protected], I'll make sure your sign up email isn't rejected on our end. Sometimes the system picks up certain emails and assumes they are spam, then blocking them from joining the forums and we just need to go around that basically. Let me know as I'd love to have you join the forums with us!
Take care and thanks again for writing.
Regards,
Charlene.
Mystele Kirkeeng
Jill, thank you so much for posting this info about the ketogenic way of eating. I started eating this way almost two months ago now. We live in the Midwest where it is basically humid year round, and that does a number on my lungs. Then, recently, it dawned on me that I've been waking up without that dreaded icky feeling in my chest, and I'm actually living life outside my home again! The humidity has not affected me to the same degree for weeks now as it did pre-keto. I have no clue what is going on- maybe the inflammation benefits of keto? I just told a friend today that I thought it was helping. Happy to think at least one other person thinks the same!
Keep going!
Mystele
Steven Dragoo
Hi Charlene - I know it is most difficult for those younger than I. Reading your post and the responses is a gift because it is reality. My most difficult trial so far has been finding out on my own and having to tell my wife on Skype. We have been married only 5.5 years and were looking forward to enjoying an active life in our church when she can come here stateside but that seems greatly diminished. Yet we have hope and know there are many things we can do for our health now. Just praying we get to maximize our time we have left... SteveD
Charlene Marshall
Hi Steve,
Thanks for getting back in touch with me. I think regardless of age, this disease is cruel and unfair and no one should have to deal with it. I hope I am alive to celebrate the day a cure is found - I think we're close! It just needs to happen as soon as possible, as far too many people are suffering. Hopefully your transplant will be successful - still waiting, no calls yet? Then you and your wife can resume plans for an active life together in the state of your choice. Fingers crossed all goes well ... maintaining hope is definitely important. Wishing you well!
Cheers,
Charlene.
Brian Wilson
I’m in my early 80s, about 2 yrs in to IPF and really feel for the younger people diagnosed with this awful disease. The only advice I can offer is to stay close to those you love and who love you. Try not to shut them out. Focus on what you still have and what you can still achieve. I thought the following words so significant to us with IPF.
“Life should not be measured by the number of breaths we take, but the places and moments that take our breath away”
Charlene Marshall
Hi Brian,
Thanks so much for reading my columns and for reaching out via the comments. So sorry to hear of your IPF diagnosis two years ago! It sounds like your timeline of living with IPF is similar to mine as I've been dealing with it about 2.5 years as well. It is cruel, regardless of age, isn't it? I like your advice, and it is a piece of information I need to do my best to remember -- sometimes I unintentionally shut people out because I am angry and/or I don't want to hurt them. However, that is not what any of us need! I also love that quote, thanks for sharing. I actually have it up in script above my bed :)
Take care,
Charlene.
Laurie Swift
Hey, just today I woke up wanting it all to be over. I’ve been called a light, a trooper, amazing, refreshing, an inspiration all because of my attitude. I am 2 years in and on 24 hour oxygen. I still leave the house on my portable tank for about 21/2 hours at a time. I am on Hospice and morphine. Until today I have always had hope for healing, a cure, or at least a quick death. Having no fear of death itself( bring on eternal life) , I guess I’m entering the phase of getting through this ending. It helps me to stay connected with my friends and family in all the ways I can offering them strength In their struggles which are very real to them. Getting outside of my small world and reaching out helps.
Your young life facing this prognosis is much different than my 69 year old self. To you I would
say: Use your God given gifts to continue offering us encouragement and perspective. I love your spirit!! You kept me going today!!
Charlene Marshall
Hi Laurie,
Thank you so much for reading my column and for connecting via the comments. I'm so sorry to hear of your tough experience with this cruel disease, and I don't think it is unnatural or abnormal to be entering the phase of getting through this ending. I am not on hospice or 24/7 oxygen and sometimes wish this disease would be over, no matter how it ends. Thank you for being brave enough to share those thoughts with me. Reaching out certainly does help, and channeling energy by helping others takes so much strength -- kudos to you Laurie!
I am also incredibly touched by your kind words, and have taken them to heart... thank you so much! I am so very grateful to you, and as a result of your kind words, I will continue to write and be there for others because of your impact. Thank you so much!!!
Write any time!
Warm regards,
Charlene.
James Pillows
Hi Charlene, Jim from Texas I was first told I had copd a treated for this for about a year, then another test showed it was IPF. After the doctor told me of this I was expecting death to be just around the corner he gave me two meds brouchours Esbriet & OFEV. After reading the side effects of both I wanted no part of them. Due to some disagreements with the doctor in Lufkin I started going to one in Houston this would have been late Nov. 2016. He sat with me and really give me a good description of what was IPF was and what OFEV could do for me. I started OFEV in mid Jan. 2017. My last ct scan showed my lungs were what they were 6 months eairler which was good news. I have been blessed and did not have any side effects from OFEV. I like everyone else get down in the dumps from time to time but try to stay busy doing things I can. I play the dobro guitar and the group I play with goes to several churches a month that has open mike singings. This helps me a lot and I get to be around other people. I am very active in my church and go all services this brings me closer to God. I still travel some I went to Los Cobos Mexico in June to meet my son. I have a trip to Chicago in mid Sept. as I am a mentor for OFEV looking forward to this. I have a hernia operation set for tomorrow. Going to leave for Houston very shortly and I drive myself. I still live by myself as I am a widower, do housework, cooking, ironing, etc. By the way I will be 85 in Nov. I still feel blessed by God that I am doing as well as I am. As a few has said before live one day at a time and put God first. Thanks for your time. Jim
Charlene Marshall
Hi James,
Thanks so much for reading my columns and for reaching out via the comments. I'm really thrilled to hear about your experience with OFEV, especially that your lung scan remained stable for 6+ months. That is excellent news! I know sometimes it is hard to feel comfortable with doctors, especially those who don't take the time to explain your disease to you and the treatment options. It is even harder when you fear they might not even understand IPF themselves, which has happened to me a few times! Such wonderful news to hear of your travel plans and your enjoyment of your time at church. Continue to do these things that bring you joy, especially in the "down" moments, which all of us are entitled to have! Kudos to you and the way you live your life Jim, thank you for inspiring me today! Goodluck with your surgery, hope it went well.
Kind regards,
charlene.
Roger Wenschlag
As a 74-year-old in July. 2015, while in urgent care to get a stronger nasal decongestant, the doctor said my lungs sounded like Velcro. I said, "That doesn't sound good," and she said, "Perhaps not, let's get an x-ray." Sure enough, after meeting with my internist and after a CT scan, etc. I was diagnosed with IPF.
I then read everything about the disease on the internet. When I saw my pulmonologist for the first time I basically said, "Read me the will." She said three things: I'm going to be with you for a long time, I'm going to put you on Esbriet which may extend your life, and quit reading the internet." My fears were allayed and I got into a frame of mind that allowed me to live my life and do the pretty much the things I wanted to do. All things considered I've done pretty well. I can see some decline in lung function, but I'll just keep plugging along.
My biggest source of aggravation is not being able to do some chores around the house/yard. I'm starting to hire out some work and getting help from my adult son. My biggest fear is suffocating to death, but my doctor assured me that it won't be as horrible as it sounds because morphine eliminates the feeling of suffocation.
Living with IPF is no picnic, but through my faith, my supportive wife, and my family and friends my mental/emotional framework is doing OK.
Charlene Marshall
Hi Roger,
Thanks so much for reading my columns and for getting in touch with us!
I really appreciate you sharing the response of your doctor's three comments following your diagnosis. I wish many other doctors would take that approach, especially the "I am going to be with you for a long time". Sounds like you've got a good one. I also am so glad she told you not to read things online! I sometimes do this but I make a point of reading only credible information, and as of recently, I've even stopped reading things online almost entirely. It is an excellent piece of advice.
So glad you're able to continue trekking along, and I hope you will continue to have many more good days. It seems as though you have the right frame of mind to live with IPF, as you say and that is important.
I pray you continue to do well Roger, and I'm so glad you have such a great support network behind you. Thanks again for getting in touch.
Kind regards,
Charlene.